Exploring the Role of Nurses in Advance Care Planning Within Long-Term Care Homes: A Qualitative Study.

Background: Residents in long-term care homes (LTCHs) are often diagnosed with chronic, life-limiting illnesses, and it is now a common site to provide high levels of care and eventual death. There is an urgent need to address communication gaps and uncertainties surrounding resident's end of life preferences. Nurses are well situated to be key facilitators of necessary advance care planning (ACP), ensuring residents have discussions with family, substitute decision-makers and healthcare providers regarding future health and personal care preferences. However, LTCHs present unique challenges for nurses due to not only complex comorbidities but also staffing dynamics. Purpose: This study explored the experiences and perceptions of Registered Nurses (RNs) and Registered Practical Nurse (RPNs) in LTCHs regarding their role in engaging residents and families in ACP discussions. Methods: Qualitative interpretive descriptive methodology was used. Data were collected from two LTCHs in Southern Ontario with a sample of 15 nurses (7 RNs and 8 RPNs). Analysis involved review of semistructured interviews, field notes, and utilizing constant comparison within an inductive approach. Results: Power and authority dynamics in LTCH's was an overarching theme in the data, with four subthemes: (1) Nurses lacking clarity about ACP, (2) nurses' uncertainty regarding their role in ACP, (3) nurses feeling uncomfortable engaging in ACP discussions, and (4) nurses struggling to support families in ACP discussions. Conclusion: Recommendations for nurses, healthcare providers, LTCH administrators, and policy makers include: (1) development of policies which support, from a systemic level, nurses to feel safe while engaging in ACP; (2) reassessing LTCH's hierarchical structure, and clarifying RN, RPN, and interdisciplinary team members roles in ACP; (3) developing culture change that allows a team and person-centered approach to ACP; and (4) providing ongoing education and mentorship for nurses to manage family dynamics and expand their understanding of ACP beyond a biomedical lens.

Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

Friendly Visiting Programs for Older People Experiencing Social Isolation: A Realist Review of what Works, for whom, and under what Conditions.

Many social interventions have been developed with the hopes of reducing and preventing social isolation among older people (e.g., recreation, arts-based programs and social prescription). Friendly visiting programs, also known as befriending schemes, have been a mainstay in this area for decades and are largely thought to be effective at reconnecting older people (≥ 60 years of age) experiencing isolation. Research and evaluations have yet to determine, however, how and why these programs may be most successful, and under what conditions. This article presents the findings of a realist synthesis aimed at identifying the critical mechanisms and contextual factors that lead to successful outcomes in friendly visiting programs. Seven studies are synthesized to inform a friendly visiting program theory accounting for key mechanisms (e.g., provision of informal support) and underlying contexts (e.g., training of volunteers) that can be used to inform future programs. Recommendations for future research are also presented.

A Workplace Environmental Scan of Employed Carers During COVID-19.

The carer-employee experience has undergone multiple shifts during the COVID-19 pandemic. This study seeks to understand how changes in the workplace as a result of the pandemic have impacted employed carers with their ability to perform both care obligations and paid work responsibilities. Using an online workplace-wide survey at a large Canadian firm, we conducted an environmental scan of: the current state of workplace supports and accommodations, supervisor attitudes, and carer-employee burden and health. Our findings demonstrate that while employees are generally in good health, care burden and time spent caregiving has been higher during COVID-19. Notably, employee presenteeism is higher during the pandemic than it was previously, with carer-employees experiencing significantly reduced levels of co-worker support. The most common workplace adaptation to COVID-19, work-from-home, was preferred by all employees as it allowed greater schedule control. However, this comes at the cost of reduced communications and sense of workplace culture, especially for carer-employees. We identified several actionable changes within the workplace, including: greater visibility of existing carer resources, and standardized training of managers on carer issues.

Older adults' experiences and perceived impacts of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) for diabetes self-management in Canada: a qualitative descriptive study.

OBJECTIVES: To assess the experiences and perceived impacts of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) from the perspectives of older adults with diabetes and other chronic conditions. The ACHRU-CPP is a complex 6-month self-management evidence-based intervention for community-living older adults aged 65 years or older with type 1 or type 2 diabetes and at least one other chronic condition. It includes home and phone visits, care coordination, system navigation support, caregiver support and group wellness sessions delivered by a nurse, dietitian or nutritionist, and community programme coordinator. DESIGN: Qualitative descriptive design embedded within a randomised controlled trial was used. SETTING: Six trial sites offering primary care services from three Canadian provinces (ie, Ontario, Quebec and Prince Edward Island) were included. PARTICIPANTS: The sample was 45 community-living older adults aged 65 years or older with diabetes and at least one other chronic condition. METHODS: Participants completed semistructured postintervention interviews by phone in English or French. The analytical process followed Braun and Clarke's experiential thematic analysis framework. Patient partners informed study design and interpretation. RESULTS: The mean age of older adults was 71.7 years, and the mean length of time living with diabetes was 18.8 years. Older adults reported positive experiences with the ACHRU-CPP that supported diabetes self-management, such as improved knowledge in managing diabetes and other chronic conditions, enhanced physical activity and function, improved eating habits, and opportunities for socialisation. They reported being connected to community resources by the intervention team to address social determinants of health and support self-management. CONCLUSIONS: Older adults perceived that a 6-month person-centred intervention collaboratively delivered by a team of health and social care providers helped support chronic disease self-management. There is a need for providers to help older adults connect with available health and social services in the community. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov ID: NCT03664583; Results.

How do individual, social, environmental, and resilience factors shape self-reported health among community-dwelling older adults: a qualitative case study.

BACKGROUND: While older adults are living longer, they often face health challenges, including living with multiple chronic conditions. How older adults respond and adapt to the challenges of multimorbidity to maintain health and wellness is of increasing research interest. Self-reported health, emerging as an important measure of health status, has broad clinical and research applications, and has been described as a predictor of future morbidity and mortality. However, there is limited understanding of how individual, social, and environmental factors, including those related to multimorbidity resilience, influence self-reported health among community-dwelling older adults (≥ 65 years). METHODS: Informed by the Lifecourse Model of Multimorbidity Resilience, this explanatory case study research explored older adults' perceptions of how these factors influence self-reported health. Data were generated through semi-structured telephone interviews with community-dwelling older adults. RESULTS: Fifteen older adults participated in this study. Four key themes, specific to how these older adults describe individual, social, environmental, and multimorbidity resilience factors as shaping their self-reported health, were identified: 1) health is a responsibility - "What I have to do"; 2) health is doing what you want to do despite health-related limitations - "I do what I want to do"; 3) the application and activation of personal strengths - "The way you think", and; 4) through comparison and learning from others - "Looking around at other people". These themes, while distinct, were found to be highly interconnected with recurring concepts such as independence, control, and psychological health and well-being, demonstrating the nuance and complexity of self-reported health. CONCLUSIONS: Findings from this study advance understanding of the factors that influence assessments of health among community-dwelling older adults. Self-reported health remains a highly predictive measure of future morbidity and mortality in this population, however, there is a need for future research to contribute additional understanding in order to shape policy and practice.

Championing Dementia Education: Adapting an Effective Scottish Dementia Education Program for Canadian Acute Health Care Providers.

With increasing numbers of persons living with dementia and their higher rates of hospitalizations, it is necessary to ensure they receive appropriate and effective acute care; yet, acute care environments are often harmful for persons with dementia. There is a lack of dementia education for acute health care providers in Canada. Scotland presently delivers a dementia education program for health care providers, known as the Scottish National Dementia Champions Programme. The objective of this Policy and Practice Note is to present the collaborative work of Scottish experts and Canadian stakeholders to adapt the Dementia Champions Programme for use in Canada. This work to date includes: (a) an environmental scan of Canadian dementia education for acute health care providers; (b) key informant interviews; and, (c) findings from a two-day planning meeting. The results of this collaborative work can and are being used to inform the next steps to develop and pilot a Canadian dementia education program.

Adapting the Namaste Care Program for Use with Caregivers of Community-Dwelling Older Adults with Moderate to Advanced Dementia: A Qualitative Descriptive Study.

Family/friend caregivers are highly involved in supporting older adults with dementia who are 65 years of age or older with daily activities, especially when these older adults with dementia are living at home. There is a need for psychosocial interventions for caregivers of older adults with moderate to advanced dementia, as most interventions focus on persons at earlier stages. Namaste Care is a psychosocial, multisensory program intended to enhance quality of life for people with advanced dementia and their caregivers; however, it has not yet been adapted for use in a home setting. In this study, caregivers collaborated in adapting Namaste Care during workshops so that it could be delivered by caregivers of older adults with moderate to advanced dementia at home. Key findings were that Namaste Care resonated with the daily activities of caregivers, but that the intervention required modifications to ensure that it could be tailored to the needs and realities of caregivers and persons with dementia.

Building collaborative relationships with family caregivers of hospitalized older persons with delirium superimposed on dementia: A qualitative study.

AIMS: To explore experiences of family caregivers providing support to older persons with delirium superimposed on dementia in acute care hospitals, their role in detection and management of this condition, and support they require. DESIGN: This study has an exploratory-descriptive design using interpretive description methodology. METHODS: Semi-structured interviews were conducted with nine caregivers from January to April 2020. Interview transcripts underwent thematic analysis. FINDINGS: Three themes were identified: (1) family caregivers found delirium superimposed on dementia to be an overwhelming experience, (2) family caregivers can play an important role in the detection and management of delirium superimposed on dementia and (3) family caregivers' experiences were influenced by the nature of their relationship with the health care team. Family caregivers found the experience distressing and felt unprepared to face the condition. Family caregivers also possessed knowledge helpful in detecting acute changes and caring for the older person. Family caregivers' relationships with the health care team varied: some felt supported by the team, while others experienced a power imbalance, characterized by lack of communication and opportunities to participate in care. CONCLUSIONS: Family caregivers were distressed to see family members hospitalized with delirium superimposed on dementia. Family caregivers are also ideally positioned to detect the condition and participate in care. However, power imbalances remain, leaving family caregivers feeling disempowered and believing the health care team had more control over the older person's care. IMPACT: Findings highlight the need for strategies to address the distress and disempowerment experienced by family caregivers of hospitalized older persons with delirium superimposed on dementia. By building collaborative relationships, nurses and other health care team members can help family caregivers navigate the complex experience with delirium superimposed on dementia and reduce distress, with the ultimate goal of facilitating family caregivers' ability to care for older persons in the community. NO PATIENT OR PUBLIC CONTRIBUTION: While the study participants are members of the public, this population was not involved in the study design and analysis. This method aligns with interpretive description, where researchers are not just a medium through which participants speak, but also interpretive instruments who discern insights not accessible to persons who may be familiar with only a single case.

Experiences of caregivers of community-dwelling older persons with moderate to advanced dementia in adapting the Namaste Care program: a qualitative descriptive study.

BACKGROUND: Globally many older persons with dementia are living at home to maintain independence within the community. As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family members and friends to complete their daily activities. Family and friend caregivers, however, often report a lack of preparation for their caregiving role. There are few psychosocial programs that can be delivered by caregivers of community-dwelling older persons with moderate to advanced dementia. Namaste Care is a psychosocial intervention, predominantly used in long-term care, to improve the quality of life of persons with advanced dementia. Namaste Care provides multisensory stimulation for persons with dementia through meaningful activities such as music, massage, aromatherapy, and nutrition. There have been limited attempts at adapting Namaste Care for use by caregivers in the community.There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement so that strategies can be put in place for a positive experience. The purpose of this study is to explore the experiences of caregivers who participated in workshop sessions to adapt Namaste Care for community-dwelling older persons with moderate to advanced dementia. METHODS: A qualitative descriptive design was used. Six caregivers residing in Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) that were guided by the Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework. Caregivers completed individual post-workshop interviews. Experiential thematic analysis was used to analyze interviews and post-interview researcher notes. RESULTS: Key findings were that caregivers had a positive experience in adapting Namaste Care by learning how to improve their caregiving skills and being supported to engage in research through multiple facilitators such as flexible scheduling and an inclusive and respectful environment. Having designated time for discussions between caregivers was perceived as important to forming partnerships within the group to support co-creation of knowledge. CONCLUSION: Findings support the need to improve caregiver research engagement processes by ensuring that caregivers can benefit through learning opportunities and discussions and empowering caregivers to value their contributions in adapting interventions.

As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family and friend caregivers to accomplish their daily activities. Caregivers, however, often report a lack of preparation for their caregiving role. There are few programs focusing on skill-building and positive interactions that can be delivered by caregivers of older persons with moderate to advanced dementia at home. Namaste Care is a program originally created for long-term care that provides multisensory stimulation for persons with dementia through activities such as music, massage, aromatherapy, and nutrition. It has not yet been adapted for use by caregivers in the community. There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement. The purpose of this study is to explore the experiences of caregivers who participated in workshops to adapt Namaste Care for older persons with moderate to advanced dementia at home. A qualitative descriptive design was used. Six caregivers from Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) and completed individual post-workshop interviews. Interviews and notes were analyzed for themes. Key findings were that caregivers had a positive experience by learning how to improve their caregiving skills and being supported to engage in research through numerous strategies such as flexible scheduling and an inclusive environment. Findings support the need to improve caregiver research engagement by ensuring that caregivers experience benefits from their involvement and empowering them to value their contributions in adapting interventions.

Feasibility, acceptability, and preliminary effectiveness of the adapted Namaste Care program delivered by caregivers of community-dwelling older persons with moderate to advanced dementia: a mixed methods feasibility study.

BACKGROUND: Caregivers have considerable responsibilities in supporting persons in advanced stages of dementia, however they receive little education. Namaste Care is a multisensory program originally designed to be delivered by healthcare providers in long-term care homes for persons with advanced dementia. The program has not yet been adapted and evaluated for use by caregivers of persons with moderate to advanced dementia living at home. The purpose of this feasibility study is to determine the feasibility, acceptability and preliminary effectiveness of the adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia. METHODS: This feasibility study, with a one-group before-after design and interviews, was part of a larger study using a multiphase mixed methods design. A total of 12 caregivers delivered the program over three months. Caregivers completed questionnaires on caregiver quality of life, perceptions of caregiving, self-efficacy, and burden at baseline and 3-month follow-up. Caregivers participated in interviews at the 3-month follow-up to explore acceptability and perceived benefit. Descriptive statistics and paired t-tests were used to analyze quantitative data. A secondary analysis used multiple imputation to explore the impact of missing data. Experiential thematic analysis was used in analyzing qualitative data. RESULTS: The adapted Namaste Care program was judged to be feasible, given that all caregivers used it at least twice a week over the 3-month period. The retention rate of caregivers was 83% (10 of 12). Caregivers perceived that the program was practical, enhanced the wellbeing of persons with dementia, and brought them closer in their relationships with persons with dementia. There were no statistically significant changes for quality of life, perceptions of caregiving, self-efficacy, or burden outcomes. Multiple imputation results revealed promising findings for an improvement in caregiver wellbeing related to quality of life. CONCLUSIONS: The adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia was feasible and acceptable. The program has the potential to enhance the quality of life and other outcomes of caregivers, however there is a need to conduct a larger trial that is adequately powered to detect these effects.

A comprehensive mobility discharge assessment framework for older adults transitioning from hospital-to-home in the community-What mobility factors are critical to include? Protocol for an international e-Delphi study.

BACKGROUND: Mobility deficits have been identified as an independent risk factor for hospital readmission for adults ≥65 years. Despite evidence indicating how determinants additively influence and predict mobility, no hospital-to-home care transition models comprehensively assess all seven mobility determinants, cognitive, financial, environmental, personal, physical, psychological, and social. There is currently a lack of clarity regarding what factors clinicians and researchers should evaluate for each mobility determinant. The purpose of this e-Delphi study is to prioritize and reach consensus on the factors for each mobility determinant that are critical to assess as part of the Comprehensive Mobility Discharge Assessment Framework (CMDAF) when older adults are discharged from hospital-to-home. METHODS: This protocol paper is an international modified e-Delphi study following the Recommendations for the Conducting and Reporting of Delphi Studies. International researchers, clinicians, older adults and family caregivers residing in a country with universal or near-universal health coverage will be invited to participate as 'experts' in three e-Delphi rounds administered through DelphiManager©. The e-Delphi Round 1 questionnaire will be developed based on scoping review findings and will be pilot tested. For each round, experts will be asked to rate factors for each determinant that are critical to assess as part of the CMDAF using a 9-point scale: Not Important (1-3), Important but Not Critical (4-6), and Critical (7-9). The scale will include a selection option of "unable to score" and experts will also be asked to provide a rationale for their scoring and suggest missing factors. Experts will receive feedback summaries in Rounds 2 and 3 to guide them in reflecting on their initial responses and re-rating of factors that have not reached consensus. The criteria for reaching consensus will be if ≥70% of experts rate a factor as "critical" (scores ≥7) and ≤ 15% of experts rate a factor as "not important" (scores≤ 3). Quantitative data will be analyzed using median values, frequencies, percentages, interquartile range, and bar graphs; Wilcoxon matched-pairs signed-rank test will be used to assess the stability of participants' responses. Rationale (qualitative data) provided in the open-ended comments section will be analyzed using content analysis. CONCLUSION: This study is a first step in developing the CMDAF and will be used to guide a subsequent e-Delphi survey to decide on the tools that should be used to measure the examples of each factor included in our framework.

Implementation of the Community Assets Supporting Transitions (CAST) transitional care intervention for older adults with multimorbidity and depressive symptoms: A qualitative descriptive study.

BACKGROUND: Older adults with multimorbidity experience frequent care transitions, particularly from hospital to home, which are often poorly coordinated and fragmented. We conducted a pragmatic randomized controlled trial to test the implementation and effectiveness of Community Assets Supporting Transitions (CAST), an evidence-informed nurse-led intervention to support older adults with multimorbidity and depressive symptoms with the aim of improving health outcomes and enhancing transitions from hospital to home. This trial was conducted in three sites, representing suburban/rural and urban communities, within two health regions in Ontario, Canada. PURPOSE: This paper reports on facilitators and barriers to implementing CAST. METHODS: Data collection and analysis were guided by the Consolidated Framework for Implementation Research framework. Data were collected through study documents and individual and group interviews conducted with Care Transition Coordinators and members from local Community Advisory Boards. Study documents included minutes of meetings with research team members, study partners, Community Advisory Boards, and Care Transition Coordinators. Data were analyzed using content analysis. FINDINGS: Intervention implementation was facilitated by: (a) engaging the community to gain buy-in and adapt CAST to the local community contest; (b) planning, training, and research meetings; (c) facilitating engagement, building relationships, and collaborating with local partners; (d) ensuring availability of support and resources for Care Transition Coordinators; and (e) tailoring of the intervention to individual client (i.e., older adult) needs and preferences. Implementation barriers included: (a) difficulties recruiting and retaining intervention staff; (b) difficulties engaging older adults in the intervention; (c) balancing tailoring the intervention with delivering the core intervention components; and (c) Care Transition Coordinators' challenges in engaging providers within clients' circles of care. CONCLUSION: This research enhances our understanding of the importance of considering intervention characteristics, the context within which the intervention is being implemented, and the processes required for implementing transitional care intervention for complex older adults.

Factors impacting the access and use of formal health and social services by caregivers of stroke survivors: an interpretive description study.

BACKGROUND: Evidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting that caregivers might benefit from ongoing engagement with supportive services. However, little is known about caregivers' use of formally funded health and social services, or the factors influencing their access to and use of these services. The aim of this study is to increase understanding of the factors that influence stroke caregivers' access and use of formal health and social services, from the perspective of stroke caregivers and healthcare providers. METHODS: A qualitative study was conducted with stroke caregivers and health providers in Ontario, Canada using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years previous and healthcare providers who support caregivers and stroke survivors. All participants provided written informed consent. Interview data were analyzed using constant comparison to identify codes and develop key thematic constructs. RESULTS: A total of 40 interviews were conducted with 22 stroke caregivers at an average 30-months post-stroke and 18 health providers. Factors that influenced stroke caregivers' access and use of services included: finances and transportation; challenges caregivers faced in caring for their health; trust that they could leave their family member and trust in health providers; limited information pertaining to services and a lack of suitable services; and the response of their social networks to their caregiving situation. CONCLUSION: Stroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting.

Tools for assessing the scalability of innovations in health: a systematic review.

BACKGROUND: The last decade has seen growing interest in scaling up of innovations to strengthen healthcare systems. However, the lack of appropriate methods for determining their potential for scale-up is an unfortunate global handicap. Thus, we aimed to review tools proposed for assessing the scalability of innovations in health. METHODS: We conducted a systematic review following the COSMIN methodology. We included any empirical research which aimed to investigate the creation, validation or interpretability of a scalability assessment tool in health. We searched Embase, MEDLINE, CINAHL, Web of Science, PsycINFO, Cochrane Library and ERIC from their inception to 20 March 2019. We also searched relevant websites, screened the reference lists of relevant reports and consulted experts in the field. Two reviewers independently selected and extracted eligible reports and assessed the methodological quality of tools. We summarized data using a narrative approach involving thematic syntheses and descriptive statistics. RESULTS: We identified 31 reports describing 21 tools. Types of tools included criteria (47.6%), scales (33.3%) and checklists (19.0%). Most tools were published from 2010 onwards (90.5%), in open-access sources (85.7%) and funded by governmental or nongovernmental organizations (76.2%). All tools were in English; four were translated into French or Spanish (19.0%). Tool creation involved single (23.8%) or multiple (19.0%) types of stakeholders, or stakeholder involvement was not reported (57.1%). No studies reported involving patients or the public, or reported the sex of tool creators. Tools were created for use in high-income countries (28.6%), low- or middle-income countries (19.0%), or both (9.5%), or for transferring innovations from low- or middle-income countries to high-income countries (4.8%). Healthcare levels included public or population health (47.6%), primary healthcare (33.3%) and home care (4.8%). Most tools provided limited information on content validity (85.7%), and none reported on other measurement properties. The methodological quality of tools was deemed inadequate (61.9%) or doubtful (38.1%). CONCLUSIONS: We inventoried tools for assessing the scalability of innovations in health. Existing tools are as yet of limited utility for assessing scalability in health. More work needs to be done to establish key psychometric properties of these tools. Trial registration We registered this review with PROSPERO (identifier: CRD42019107095).

Self-reported health and the well-being paradox among community-dwelling older adults: a cross-sectional study using baseline data from the Canadian Longitudinal Study on Aging (CLSA).

BACKGROUND: Self-reported health is a widely used epidemiologic measure, however, the factors that predict self-reported health among community-dwelling older adults (≥65 years), especially those with multimorbidity (≥2 chronic conditions), are poorly understood. Further, it is not known why some older adults self-report their health positively despite the presence of high levels of multimorbidity, a phenomenon known as the well-being paradox. The objectives of this study were to: 1) examine the factors that moderate or mediate the relationship between multimorbidity and self-reported health; 2) identify the factors that predict high self-reported health; and 3) determine whether these same factors predict high self-reported health among those with high levels of multimorbidity to better understand the well-being paradox. METHODS: A cross-sectional analysis of baseline data from the Canadian Longitudinal Study on Aging was completed (n = 21,503). Bivariate stratified analyses were used to explore whether each factor moderated or mediated the relationship between multimorbidity and self-reported health. Logistic regression was used to determine the factors that predict high self-reported health in the general population of community-dwelling older adults and those displaying the well-being paradox. RESULTS: None of the factors explored in this study moderated or mediated the relationship between multimorbidity and self-reported health, yet all were independently associated with self-reported health. The 'top five' factors predicting high self-reported health in the general older adult population were: lower level of multimorbidity (odds ratio [OR] 0.75, 95% confidence interval [CI] 0.74-0.76), female sex (OR 0.62, CI 0.57-0.68), higher Life Space Index score (OR 1.01, CI 1.01-1.01), higher functional resilience (OR 1.16, CI 1.14-1.19), and higher psychological resilience (OR 1.26, CI 1.23-1.29). These same 'top five' factors predicted high self-reported health among the subset of this population with the well-being paradox. CONCLUSIONS: The factors that predict high self-reported health in the general population of older adults are the same for the subset of this population with the well-being paradox. A number of these factors are potentially modifiable and can be the target of future interventions to improve the self-reported health of this population.

Formal Health and Social Services That Directly and Indirectly Benefit Stroke Caregivers: A Scoping Review of Access and Use.

Stroke can be a life altering event that necessitates considerable amounts of formal and informal care. The impacts of stroke often persist over time requiring ongoing support for stroke survivors. Family members provide the majority of care and experience many life changes as a result of their caregiving role including social, financial, employment and health impacts. Formal supports such as counselling, respite, and health promotion initiatives that directly benefit caregivers or benefit them indirectly through supporting the stroke survivor, are well-placed to help caregivers manage their caregiving role. However, to date little is known about formal service use by stroke caregivers and the factors that influence their service use. This scoping review provides a critique and synthesis of what is known about stroke caregivers' access and use of formal services intended to support them. Findings suggest that while services are available, caregivers' ability to use them are impacted by both facilitators and barriers. Facilitators included: sex, age, and having a higher household income (depending on services used). Barriers included: high cost, poor service quality and deficient knowledge/communication regarding service availability. This review highlights a significant gap in our knowledge of caregivers' experience in accessing and using formal services.

The Aging, Community and Health Research Unit Community Partnership Program (ACHRU-CPP) for older adults with diabetes and multiple chronic conditions: study protocol for a randomized controlled trial.

BACKGROUND: Older adults (≥65 years) with diabetes and multiple chronic conditions (MCC) (> 2 chronic conditions) experience reduced function and quality of life, increased health service use, and high mortality. Many community-based self-management interventions have been developed for this group, however the evidence for their effectiveness is limited. This paper presents the protocol for a randomized controlled trial (RCT) comparing the effectiveness and implementation of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) to usual care in older adults with diabetes and MCC and their caregivers. METHODS: We will conduct a cross-jurisdictional, multi-site implementation-effectiveness type II hybrid RCT. Eligibility criteria are: ≥65 years, diabetes diagnosis (Type 1 or 2) and at least one other chronic condition, and enrolled in a primary care or diabetes education program. Participants will be randomly assigned to the intervention (ACHRU-CPP) or control arm (1:1 ratio). The intervention arm consists of home/telephone visits, monthly group wellness sessions, multidisciplinary case conferences, and system navigation support. It will be delivered by registered nurses and registered dietitians/nutritionists from participating primary care or diabetes education programs and program coordinators from community-based organizations. The control arm consists of usual care provided by the primary care setting or diabetes education program. The primary outcome is the change from baseline to 6 months in mental functioning. Secondary outcomes will include, for example, the change from baseline to 6 months in physical functioning, diabetes self-management, depressive symptoms, and cost of use of healthcare services. Analysis of covariance (ANCOVA) models will be used to analyze all outcomes, with intention-to-treat analysis using multiple imputation to address missing data. Descriptive and qualitative data from older adults, caregivers and intervention teams will be used to examine intervention implementation, site-specific adaptations, and scalability potential. DISCUSSION: An interprofessional intervention supporting self-management may be effective in improving health outcomes and client/caregiver experience and reducing service use and costs in this complex population. This pragmatic trial includes a scalability assessment which considers a range of effectiveness and implementation criteria to inform the future scale-up of the ACHRU-CPP. TRIAL REGISTRATION: Clinical Trials.gov Identifier NCT03664583 . Registration date: September 10, 2018.

Out-of-pocket expenses related to aging in place for frail older people: a scoping review.

OBJECTIVE: The objective of this scoping review was to map and describe the available evidence reporting out-of-pocket expenses related to aging in place for older people with frailty and their caregivers. INTRODUCTION: As the global population ages, there has been increasing attention on supporting older people to live at home in the community as they experience health and functional changes. Older people with frailty often require a variety of supports and services to live in the community, yet the out-of-pockets costs associated with these resources are often not accounted for in health and social care literature. INCLUSION CRITERIA: Sources that reported on the financial expenses incurred by older people (60 years or older) with frailty living in the community, or on the expenses incurred by their family and friend caregivers, were eligible for inclusion in the review. METHODS: We searched for published and unpublished (ie, policy papers, theses, and dissertations) studies written in English or French between 2001 and 2019. The following databases were searched: CINAHL, MEDLINE, Scopus, Embase, PsycINFO, Sociological Abstracts, and Public Affairs Index. We also searched for gray literature in a selection of websites and digital repositories. JBI scoping review methodology was used, and we consulted with a patient and family advisory group to support the relevance of the review. RESULTS: A total of 42 sources were included in the review, including two policy papers and 40 research papers. The majority of the papers were from the United States (n = 18), with others from Canada (n = 6), the United Kingdom (n = 3), Japan (n = 2), and one each from Australia, Brazil, China, Denmark, Israel, Italy, The Netherlands, Poland, Portugal, Singapore, South Korea, Taiwan, and Turkey. The included research studies used various research designs, including cross-sectional (n = 18), qualitative (n = 15), randomized controlled trials (n = 2), longitudinal (n = 2), cost effectiveness (n = 1), quasi-experimental (n = 1), and mixed methods (n = 1). The included sources used the term "frailty" inconsistently and used various methods to demonstrate frailty. Categories of out-of-pocket expenses found in the literature included home care, medication, cleaning and laundry, food, transportation, medical equipment, respite, assistive devices, home modifications, and insurance. Five sources reported on out-of-pocket expenses associated with people who were frail and had dementia, and seven reported on the out-of-pocket expenses for caregivers of people with frailty. While seven articles reported on specific programs, there was very little consistency in how out-of-pocket expenses were used as outcome measures. Several studies used measures of combined out-of-pocket expenses, but there was no standard approach to reporting aggregate out-of-pocket expenses. CONCLUSIONS: Contextual factors are important to the experiences of out-of-pocket spending for older people with frailty. There is a need to develop a standardized approach to measuring out-of-pocket expenses in order to support further synthesis of the literature. We suggest a measure of out-of-pocket spending as a percentage of family income. The review supports education for health care providers to assess the out-of-pocket spending of community-dwelling older people with frailty and their caregivers. Health care providers should also be aware of the local policies and resources that are available to help older people with frailty address their out-of-pocket spending.

The impact of multimorbidity level and functional limitations on the accuracy of using self-reported survey data compared to administrative data to measure general practitioner and specialist visits in community-living adults.

BACKGROUND: Researchers often use survey data to study the effect of health and social variables on physician use, but how self-reported physician use compares to administrative data, the gold standard, in particular within the context of multimorbidity and functional limitations remains unclear. We examine whether multimorbidity and functional limitations are related to agreement between self-reported and administrative data for physician use. METHODS: Cross-sectional data from 52,854 Ontario participants of the Canadian Community Health Survey linked to administrative data were used to assess agreement on physician use. The number of general practitioner (GP) and specialist visits in the previous year was assessed using both data sources; multimorbidity and functional limitation were from self-report. RESULTS: Fewer participants self-reported GP visits (84.8%) compared to administrative data (89.1%), but more self-reported specialist visits (69.2% vs. 64.9%). Sensitivity was higher for GP visits (≥90% for all multimorbidity levels) compared to specialist visits (approximately 75% for 0 to 90% for 4+ chronic conditions). Specificity started higher for GP than specialist visits but decreased more swiftly with multimorbidity level; in both cases, specificity levels fell below 50%. Functional limitations, age and sex did not impact the patterns of sensitivity and specificity seen across level of multimorbidity. CONCLUSIONS: Countries around the world collect health surveys to inform health policy and planning, but the extent to which these are linked with administrative, or similar, data are limited. Our study illustrates the potential for misclassification of physician use in self-report data and the need for sensitivity analyses or other corrections.